Hayley S. Thompson

Perceived disadvantages and concerns about abuses of genetic testing for cancer risk: differences across African American, Latina and Caucasian women

Participation in genetic testing for cancer risk is low among women of medically underserved ethnic groups and this is due, in part, to genetic testing attitudes, specifically perceived disadvantages of genetic testing and concerns about possible abuses of genetic testing. The goals of the current study were to: (a) explore genetic testing attitudes, and (b) determine the extent to which ethnicity, awareness of genetic testing, and medical mistrust are associated with genetic testing attitudes. African American, Latina, and Caucasian women (N=273) completed an interview assessing sociodemographic information, genetic testing awareness, medical mistrust, and genetic testing attitudes. Latina participants more strongly agreed with disadvantages of testing than the other ethnic groups. Both Latina and African American women more strongly concurred with concerns about testing abuses compared to Caucasian women. In hierarchical linear regression analyses, Spanish language preference and medical mistrust were the only significant predictors of perceived disadvantages and medical mistrust was the only significant predictor of abuse concerns. These findings support the importance of identifying genetic testing attitudes that may be culturally specific in order to promote culturally competent care by genetic risk professionals.

Racial Differences in Medical Mistrust among Men Diagnosed with Prostate Cancer

Mistrust of healthcare providers and systems is a significant barrier to quality healthcare. However, limited empirical data are available on perceptions of medical mistrust among individuals who are diagnosed with cancer. The objective of this study was to identify sociodemographic, clinical, and cultural determinants of mistrust among men diagnosed with prostate cancer.

Posttreatment breast cancer surveillance and follow-up care experiences of breast cancer survivors of African descent: an exploratory qualitative study.

Breast cancer survivors are at considerable risk for breast cancer recurrence and at higher risk of developing a new breast cancer compared with women never diagnosed. It is recommended that survivors undergo careful breast cancer surveillance as cancers detected early are more treatable. However, data indicate that surveillance among African American survivors, particularly mammography, is lower than that of white survivors. There is little published work focusing on general experiences of posttreatment breast cancer surveillance among survivors of African descent. In the current qualitative pilot study, key informant interviews were conducted in order to explore the following: (1) the extent of posttreatment surveillance information provided to or obtained by survivors of African descent; (2) the actual follow-up care received by survivors in the past year; and (3) factors that are either motivators of or barriers to care. Participants were 10 African American and African Caribbean breast cancer survivors. Survivors reported a number of factors that motivated them in obtaining follow-up care: a desire to maintain good health, concern about recurrence, support from healthcare providers, familial relationships, relationships with other survivors, and religious/spiritual faith. Survivors also reported barriers to care: fear of recurrence, low support from family and friends, lack of information about posttreatment follow-up care, and medical care costs. These results represent formative work that may inform similar studies examining factors in breast cancer surveillance and follow-up care in larger samples of survivors of African descent.

Cancer fatalism and its demographic correlates among African American and Hispanic women: Effects on adherence to cancer screening

Abstract This article focuses on cancer fatalism as a barrier to regular cancer screening among African American and Hispanic women. The purpose of the study was to identify variables associated with cancer fatalism and to investigate the relationship of cancer fatalism and its correlates with adherence to screening for gynecological cancer. Study participants (83 African American women and 98 Hispanic women above the age of 18) were assessed on sociodemographic variables, family health history, current medical access and care, physicians recommendations, cancer fatalism, and adherence to cancer screening. Multivariate analyses indicated that education was the only variable associated with cancer fatalism. Fatalistic beliefs toward cancer were not associated with adherence to gynecological cancer screening, but a physicians recommendation was. These data indicate that patient-physician communication is crucially important to cancer screening.

Association between temporal orientation and attitudes about BRCA1/2 testing among women of African descent with family histories of breast cancer.

OBJECTIVEnPrevious studies have identified specific attitudes (pros and cons) about BRCA testing held by women of African descent that are associated with decisions to participate in testing. These testing attitudes may be determined, in part, by temporal orientation, or how one perceives the significance of events and the consequences of their actions in terms of past, present, and future. The current study explored the relationship between temporal orientation and pros and cons of BRCA testing among 140 women of African descent with a family history suggestive of a genetic mutation predisposing to breast cancer.nnnMETHODSnParticipants completed measures of temporal orientation and genetic testing attitudes.nnnRESULTSnMultivariate analyses indicated that future orientation was positively associated with perceived pros of testing. Additional analyses revealed significant associations between temporal orientation and specific item subsets related to the negative and positive impact of testing on family and personal control over ones health.nnnCONCLUSIONnThese results support an association between temporal orientation and attitudes about BRCA testing among women of African descent with family histories of breast cancer.nnnPRACTICE IMPLICATIONSnFindings support exploration of temporal orientation in future research on BRCA testing decisions among women of African descent and this constructs importance in developing decision aids and tailoring genetic counseling.

Enhancing the readability of materials describing genetic risk for breast cancer.

BACKGROUNDnThe number of individuals contemplating genetic testing is increasing, but the current materials and overall subject matter remain complex and not easily understood by many. The goal of this project was to evaluate efforts to revise and increase the readability of an existing information packet describing genetic risk for breast cancer.nnnMETHODSnEvaluation was conducted in two stages through two related studies. In Study 1, a focus group of multiethnic breast cancer survivors was assembled to obtain feedback on images included in the revised breast cancer genetics information packet. In Study 2, African American adult students in a literacy program evaluated the revised images (based on the feedback of the focus group in Study 1) and text of the information packet and provided ratings on readability, format, and appearance.nnnRESULTSnResponses from Study 1 participants suggested that some of the images created for the packet needed to be clearer in the concepts they were intended to convey. In Study 2, ratings of adult learners suggested difficulty with word comprehension in spite of the inclusion of definitions and a glossary. The reading level achieved was markedly lower than the college reading level required by the original information packet and other patient-directed cancer genetics materials.nnnCONCLUSIONSnAlthough efforts to clarify written materials in order to better serve patients with low literacy received generally favorable responses, continued efforts to create more user-friendly patient education materials are warranted.

Ethnic, Racial and Cultural Identity and Perceived Benefits and Barriers Related to Genetic Testing for Breast Cancer among At-Risk Women of African Descent in New York City

Background: Due to disparities in the use of genetic services, there has been growing interest in examining beliefs and attitudes related to genetic testing for breast and/or ovarian cancer risk among women of African descent. However, to date, few studies have addressed critical cultural variations among this minority group and their influence on such beliefs and attitudes. Methods: We assessed ethnic, racial and cultural identity and examined their relationships with perceived benefits and barriers related to genetic testing for cancer risk in a sample of 160 women of African descent (49% self-identified African American, 39% Black-West Indian/Caribbean, 12% Black-Other) who met genetic risk criteria and were participating in a larger longitudinal study including the opportunity for free genetic counseling and testing in New York City. All participants completed the following previously validated measures: (a) the multi-group ethnic identity measure (including ethnic search and affirmation subscales) and other-group orientation for ethnic identity, (b) centrality to assess racial identity, and (c) Africentrism to measure cultural identity. Perceived benefits and barriers related to genetic testing included: (1) pros/advantages (including family-related pros), (2) cons/disadvantages (including family-related cons, stigma and confidentiality concerns), and (3) concerns about abuses of genetic testing. Results: In multivariate analyses, several ethnic identity elements showed significant, largely positive relationships to perceived benefits about genetic testing for breast and/or ovarian cancer risk, the exception being ethnic search, which was positively associated with cons/disadvantages, in general, and family-related cons/disadvantages. Racial identity (centrality) showed a significant association with confidentiality concerns. Cultural identity (Africentrism) was not related to perceived benefits and/or barriers. Conclusions: Ethnic and racial identity may influence perceived benefits and barriers related to genetic testing for breast and/or ovarian cancer risk among at-risk women of African descent. Genetic counseling services may want to take into account these factors in the creation of culturally-appropriate services which best meet the needs of this heterogenous population.

Receipt of Genetic Counseling Recommendations Among Black Women at High Risk for BRCA Mutations

Low use of BRCA counseling and testing services among black women has been reported in several studies, even though such services may play an important role in reducing racial disparities in breast cancer. Surprisingly, little is known about the extent to which black women at high risk for BRCA mutations actually receive recommendations for BRCA counseling. Thus, a primary goal of the current study was to identify sociodemographic and clinical factors associated with the receipt of physician recommendation for genetic counseling based on the self-report of black women at high risk for BRCA mutations. In this cross-sectional study, participants were 125 black women with a family history suggestive of a hereditary breast and/or ovarian cancer syndrome. Participants were asked about their receipt of genetic counseling recommendation or referral. Physician recommendation was reported by over two-thirds of the sample. Multivariate analyses revealed that older age and study recruitment source, specifically community-based recruitment, were significantly and independently associated with lower likelihood of physician recommendation. Findings highlight the need for additional research to identify subgroups of high-risk black women among whom physician recommendation of genetic counseling is low but would benefit from such counseling.

Breast and Cervical Cancer Screening and Health Beliefs Among African American Women Attending Educational Programs

This article assessed the relationship between breast and cervical cancer screening rates and health beliefs in African American women participating in Witness Project of Harlem (WPH) education sessions. WPH is a culturally sensitive, faith-based breast and cervical cancer screening education program targeting African American women in medically underserved New York City communities. A questionnaire administered to women participating for the first time in a Witness Project education session collected demographics, adherence to breast and cervical cancer screening, and information about health beliefs related to cancer worry, medical mistrust, and religious faith. Screening adherence guidelines applied were as per the American Cancer Society recommendations. No statistically significant relationship was found between worry about getting breast or cervical cancer and screening adherence, or between screening adherence and agreement with statements about medical mistrust and religious beliefs. The low screening mammography and monthly breast self-exam rates emphasize the utility of programs like WPH that teach the importance of screening mammography and breast self-exam and point to the need for increased access to quality health care and cancer screening in underserved populations.

Program: Talking about counseling and testing (TACT)

s for Practice Notes and all correspondence concerning abstract review should be sent to Lisa D. Lieberman, Healthy Concepts, 29 Ardsley Drive, New City, NY 10956. Submissions can be mailed (include one hard copy and disk in Word format or Word Perfect) or sent by e-mail attachment to llhealth@optonline.net in Word format. Published manuscript length is approximately 300 words (excluding headings and contact information). Submitted manuscripts may be up to 700 words and will be edited for length and clarity. Include the following: name of initiative or program, contact person, sponsoring agency or agencies, address, and phone number. The program description should include the following headings: Objectives, Assessment of Needs, Program Strategy (e.g., risk reduction, community organizing, media advocacy, disease management, policy advocacy, coalition building, social support, etc.), Evaluation Approach, and Implications for Practitioners (including descriptions of any special challenges or unique circumstances that the project has overcome). Authors should not include evaluation results because Practice Notes is intended to describe processes and programs, not to assess outcomes. Submissions will be judged on applicability and utility to the health education practitioner, clarity of objectives, innovativeness and creativity, existence of evaluation plan, and potential replicability. Additional artwork, graphs, or tables may be submitted in camera-ready form.